A Cure for Heart Defects!

“I believe that this nation should commit itself to achieving the goal, before the decade is out, of landing a man on the moon and returning him safely to Earth.”
– President John F. Kennedy, May 25, 1961

 

On September 29, 2010, Fran Visco of the National Breast Cancer Coalition appeared in a video posted to YouTube. It contains a powerful message.

“We can’t count on hope as a strategy to end breast cancer. I’m giving up hope, because hope is not a solution. Hope will not end breast cancer; we need a plan, a goal… a deadline.”

What a statement… and what a shift in thinking! Think about what she is saying: HOPE CAN NOT CURE OUR DISEASE. Hope is a good and pure thing, a friend we hold close in our most desperate moments. Take note that she did not say “I am giving up on hope,” because she’s not. Hope is what keeps us going when the world crashes down around us. But we need to realize that hope alone can not fix defective hearts.

A popular phrase that you may have heard is “We will cure (chronic illness) in our lifetimes.” The problem is, all generations living with the chronic illness use that phrase as a rallying cry. Time moves on, the older generation passes away, but the phrase is still being used. Eventually, the urgency disappears. There is no real urgency for beating the disease… just an empty promise that it will happen “in our lifetimes.”

In the same vein, “Awareness” is not an endpoint for the Heart Defect community. What good is awareness if it does not bring people to take action? We are winning – the number of deaths caused by Heart Defects is dropping. The American Heart Association estimates that in 2005, 3,500 people died from Congenital Heart Defects. That’s the most current statistics that they have available, so the number may even be lower today. But that’s not acceptable. That’s still 3,500 of our friends, our families, our sons, and our daughters – dying each and every year.  Being “aware” of a Heart Defect isn’t enough, so perhaps it is time to redefine ourselves, and rethink everything we’re about, everything we are fighting for.

It’s time to declare war on Congenital Heart Defects. All out, bare knuckle, unrestricted mortal combat. Like Miss Visco said, there needs to be a plan, a goal, and a deadline.

THE PLAN:

POINT ONE: To find new medical and surgical options to increase the survivability of Congenital Heart Disease;
POINT TWO: To research the occurrences, causes, and possible prevention of Congenital Heart Disease;
POINT THREE: The reduction and elimination of mortality and disability associated with Congenital Heart Disease.

THE GOAL: To eradicate Congenital Heart Disease.

THE DEADLINE: November 29, 2024 – the 80th anniversary of the first Blalock-Taussig shunt.

So how are we going to do it?

I can’t answer that. I am not a doctor or a scientist; I have Bachelor of Science degrees in History and Political Science.  And to add to the challenge, we are going to have to do this all by ourselves. If we’ve proven one thing, it’s the fact that Congenital Heart Disease is an invisible disability and without a unified approach, we have no voice. For several years the Adult Congenital Heart Association (ACHA) traveled to Washington DC to lobby for a federal level registry of Congenital Heart Defects. Only after we united with seven other nationally recognized Heart Defect Support groups and formed the National Congenital Heart Coalition were we able to get legislation introduced in Congress and eventually inserted into the Patient Protection and Affordable Care Act.

So lets put our heads together again. It will be up to us to not only do the fund-raising, but to be the first ones to give – give our money, give our effort, and give our time. We have to gather the resources, fund the research, educate the public and lead the charge. If we don’t support our own cause, why should anyone else support it?

In 1961, President John Kennedy challenged the nation to put a man on the moon before the end of the decade. Back then, we could barely get a rocket off the ground, much less think about going that far. Along the way we won some major battles and we lost some good people, but in July 1969 the Apollo 11 crew landed safely on the moon and came home.

We have to be willing to put everything we have on the table and draw that last card. It could all blow up in our face…but we could also hit the jackpot!

Let’s rise to the challenge. This is our Apollo program, our impossible dream.

Let’s go to the moon.

Heart Defects and the 2010 Midterms

With the recent victory by the Republican Party in the 2010 midterm elections, another, larger issue looms: The Republican Party ran on the promise to repeal the Affordable Care Act and replace it with other forms of health care reform. If they can’t do that (And most likely they can not), they will refuse to fund it. And with Republicans in control of House of Representatives – where all bills that allocate money originate – this is a threat they can make good on.

This is not good news at all for Congenital Heart Defect patients. The Congenital Heart Futures Act which was once a stand alone bill, was “folded” into the Affordable Care Act. So if the Affordable Care Act is repealed, there goes the Congenital Heart Futures Act. And if it is unfunded, the Congenital Heart provisions won’t be funded either. In an ironic twist, the sections dealing with Congenital Heart research and funding never were funded to start with. We wouldn’t have lost anything, because we never had anything to start with. Just words on a piece of paper.

Tell George Washington that the Declaration of Independence is just words on a piece of paper, and let me know how that goes for you.

We can go to Washington, meet with our legislators, and request funding, but there is no guarantee. Every other worthy cause will also be in DC, trying to make sure that they get their money, too. And since we were never funded in the first place, that puts us way down on the list. After all, if we never received any money at all, there must not be much to these heart problems. If it were serious, we’d be throwing cash at it! (They don’t call it an invisible disability for nothing, folks!)

The new legislators won’t take office until January 20, 2011, so we have a little time to prepare. We can’t really prepare a strategy yet, but we can get set in our minds what we are working for.

This isn’t a party issue. It is not Republicans vs. Democrats. People of all political walks have heart defects – an unborn child’s heart begins to develop early, and often the heart is forming before the mother even knows she is pregnant. This doesn’t benefit this side or that side, it benefits people. Because a house divided cannot stand, and a house united cannot fall.

This isn’t for us. This is for our children and their children. This is for the parents who sit in the Intensive Care Unit and fear that their child’s next breath may be the last one. This is for those who have to live with medication, scars, blood draws, and the knowledge that they are different, outsiders, alone.

A lot of people believe that Conservatives and Progressives are so far apart that they can’t even order lunch together. I choose not to believe that. I think we can all work together to bring Congenital Heart Defects under control and eventually condemn them to the dustbin of history.

More than you think

June 15, 2010: Grand Rounds Blog Carnival! Entry Guidelines HERE

Wastin’ away again in Margaritaville, searching for my lost shaker of salt… — Margaritaville, Jimmy Buffett (1977)

Don’t bother looking too hard for that salt shaker, Jimmy.

What did you have the last time you ate out? Or better yet, how much did you have? A 2007 report from the research journal Obesity that states that chefs regularly overestimate portion sizes. To make matters worse, the average diner underestimates the amount of food they have consumed. It’s tempting to try to fight this “portion creep” with willpower – after all, I don’t have to eat everything on my plate, do I? (If you are less than ten years old, the answer to that question is usually “YES!”) We can’t… if it is in front of us, we’ll eat it. Maybe mom and dad really did ruin all of us when they told us to clean our plates.

Portion creep doesn’t help when you are trying to watch your weight or eat healthy. It even affects our beverages – we’ll buy a “single” drink in a 16 ounce or 24 ounce bottle. I serving isn’t nearly that big – read the nutritional label. Or just ask anyone over 30 what a “Short Coke” is. (A 6 and a half ounce bottle of Coca-Cola) Interestingly enough, older chefs routinely serve less food than younger chefs, who honed their skills in the “Supersize me!” era.

Still trying to control your diet? I’m not helping much, am I?

So when we eat out we’re getting a larger portions, and naturally a whole heapin’ helping of ingredients… including our old friend, salt. Most of the salt in our diet comes from processed meat and/or eating out. If you are on the Congestive Heart Failure (CHF) diet, you have to watch the salt. And a nice meal out may not be so nice for your heart. Salt is under attack from all sides, people are calling for manufacturers to lower the amount of salt in foods (gradually; don’t make the entire nation go cold turkey) and there has even been a call for legislation to make this a law. But not so fast – when you remove most of the salt from food, strange things start happening to the food.

So what’s the answer? Ultimately, it is up to us – we’ve got to learn to order and eat smaller portions (Not easy) and complain to the manufacturers. You can also pick up a copy of Corrine Netzer’s Complete book of Food Counts. This book covers most of the national restaurant chains, and lists their menus and the nutritional contest of a lot of their items. It’ll give you a fighting chance the next time you’re heading out for a meal.

(I am not getting anything if you choose to purchase this book)

Choose a side

I received two invitations via Facebook to “Like” a political party this week. I turned them both down.

I wholeheartedly believe in our system of government and I have voted in every election since I turned eighteen. I’ll vote for the candidate before I vote for the party, but I usually vote *COUGH*. (That’s a nice way of saying “I ain’t telling!”) But when I have the opportunity to discuss Congenital Heart Defects (CHDs) with government officials, I try not to get involved in partisan politics. The Funky Heart doesn’t support one political party over another.

In its early stages, a heart develops as a long straight tube – almost like a drinking straw. In a few days it is viable and actually starts to beat! Later, it rolls over to form a U shape and the U begins to grow together, forming the organ we have all come to know. If you are going to have a Congenital Heart Defect, this is when it begins. 124 out of 125 times the heart forms perfectly, but that one time – 1 out of 125 – there is an imperfection that leads to a heart defect. And all this occurs before your mother even knows she is pregnant. By the time your future mom goes to the doctor for the official confirmation, you could already have a Congenital Heart Defect.

That’s the reason I try to keep the Funky Heart politically neutral. Our government – from the federal government on down – is highly partisan right now. If you identify with THIS party,  you may not be able to build a relationship with members of THAT party. Both sides can have good ideas, and the voters can change the power alignment during any election.  So I feel that it is best to set my personal preferences aside and be able to work with members of any political party.

Newborn children obviously haven’t chosen a political affiliation. Both Republicans and Democrats have heart defects.  So do Independents, Libertarians, and even Green Party supporters. Even those people who choose not to vote at all are affected by them. So if you ask me to choose sides, that’s fine.

You can just count me with the people affected by a Heart Defect.

Five CHD Questions: Why?

Why are Congenital Heart Defects (CHDs) the least understood and the least funded of all the birth defects?

Despite being the birth defect with the highest rate of incidence, Congenital Heart Defects receive the least funding for research. One would think that this would be the target of massive funding, intense awareness campaigns, and major research allocations, but that is not so. In fact, it is one of the lowest.

CHDs is an “invisible disability” – we hide in plain sight. Other disabilities and illnesses have obvious signs, but the average CHDer can usually blend into a crowd with little trouble. Most of the time this is a good thing; I personally don’t prefer to stand out. One thing I write about on this blog and occasionally mention in a presentation is look at me – see how normal I am! But that also works against us as we can become lost in the shuffle.

When I was born there was no such thing as pre-natal testing; I was born on a Tuesday but it was Friday before my mother realized that there was probably something seriously wrong with me. Even today, a Fetal Echocardiogram is not standard procedure: an expectant mother normally receives this test only if her family has a history of heart defects or other factors come into play.

Despite what you may hear or read on the internet, CHDs are more survivable today than at any time in the past. A minimum of 90% of all children in the United States who undergo heart surgery survive to adulthood. And every year, the odds tilt more and more in our favor. There are currently about one million adults living with a Heart Defect and about 800,000 children.

With almost two million people living with a CHD, we’ve become our own little world. Survivors represent every gender, every race, and every age group. This diversity has led to advocacy groups of all types, such as the Adult Congenital Heart Association (ACHA), Hypoplastic Right Hearts (HRH), and Broken Hearts of the Big Bend. Every Survivor/Advocacy group serves a segment of our community and each one fills a need.

The members of the Congenital Heart Defect community are many and varied. But the one thing all segments of the CHD family needs is more awareness and better research. Because the goal of every Survivor/Advocacy group is to cease operations  because there is no need for their services anymore.

We’ll get there one day;

Thank you!

Thank you for being a friend
Traveled down the road and back again
Your heart is true you’re a pal and a confidant

– Thank You for Being a Friend, Andrew Gold (1978)

A very big THANK YOU to the people who helped make Lobby Day 2010 such a wonderful experience:

Amy Verstappen, President of the Adult Congenital Heart Association (ACHA), and her husband Richard; my wonderful hosts and tour guides;

Anna, Fatima, and Nicole; all members of the ACHA Office Staff who welcomed me and put me to work;

Amy Basken; who works for several Congenital Heart Defect (CHD) organizations, serves as ACHA’s Advocacy Director, and coordinated most of our Lobby Day activities;

Molly Nicholson of the American College of Cardiology; for her work in helping this bill become a law and also for her friendship;

Paula Miller, a great friend and fellow heart warrior who accompanied me on two of my legislative visits;

Dr. Mike McConnell, my Cardiologist at Emory University in Atlanta, and my partner on my third legislative visit;

And especially to all 150+ CHDers and Advocates who brought their message to Capitol Hill!

Lobby Day 2010: Let’s win this…

“Let’s win this for everyone who never had a chance to get here.” – Hoosiers, 1986

(LIVE UPDATES – REFRESH THIS PAGE OFTEN!)

6:26 AM: Good Morning from Lobby Day 2010, from our home base here at the Phoenix Park Hotel! I have actually been here since 5:45, but unable to get online for some reason. Then suddenly, the internet connection worked and we are in business!

I plan to liveblog throughout the day, giving updates as events warrant. If you are getting this through Facebook or through an email subscription, it might be better for you actually head over to the Funky Heart website (https://tricuspid.wordpress.com) and follow us LIVE!

The quote above is from the movie Hoosiers, about a very small (64 Students) Indiana high school Basketball Team that makes it to the state finals. As the quote says, let’s win this for everyone who never had a chance to get here – The child in the ICU at Johns Hopkins who passed away the night I was admitted in 1967. Karen McNaulty, the driving force who formed the ACHA. and my friend Jim Wong, who was here for Lobby Day 2006, 2007, and 2009, but who passed away due to Cancer earlier this year. Jim, we’ll do our best to make you proud, my friend.

6:42 am: Pace is picking up, states are being assigned to tables in ball room. SC crew will share table with Iowa, Tennessee, and Oregon. I asked for SC to be put here because I FINALLY got an internet connection and it might be bad luck to move! (No, I’m not a bit superstitious! Not at all!)

I don’t know when my lobbying assignments will take place, so I might disappear for a stretch of time. And if the internet goes out again, I might be out of luck  but we’ll deal with problems as they occur!

6:55 AM: Time for breakfast!

7:20 AM: Training session is beginning! We’re reviewing the “ask” – an “ask” is just that – what we want our legislator to do. The Congenital Heart Futures Act is law, but only words on paper until money is allocated. So the thought for today is a familiar line from the movie Jerry McGwire: “SHOW ME THE MONEY!”

Our Ask is 7.25 million dollars. 3.75 million for the Congenital Heart Defect Surveillance System, 3.5 million for pediatric CHD research. (Surveillance system for Pediatrics already exists, but does not include CHDs.)

The National Institutes of Health (NIH) does not like for Congress to say “Spend XXXX on this type of research.” They are top notch scientific minds, everything is tested and evidence based. NIH would rather be allocated total amount of funds with recommendations on how/where to spend it. They’re very good at sorting through data and finding what needs a higher level of funding.

Taking a moment to remember the warrior who are no longer with us…. and to make this a celebration of them. In the words of Paul Cardall, “Let’s Celebrate Life!”

8:09 AM: Got my Schedule: John Spratt at 10 AM, Lindsey Graham at 2:30, Jim DeMint at 4. Liveblogging is going to be a bit of a challenge this afternoon, but we’ll work it out!

I’ll have to leave about 9 to get to my meeting, need to clear up a few things before then. May be a while before I update again.

8:31 AM: Here we go! Back in a while!

8::41 AM: Slight Delay, but all good. Almost ready to catch the shuttle to the Hill.

11:07 AM: Just back from a meeting in the offices Representative John Spratt (D-SC)! His staff are well informed and seem to be on board with CHD research funding! I think he is with us!

11:41 AM: It is quiet right now, as most of the lobby teams are out. I’ve filled out my Visit Report and written a thank you note to the young lady we spoke with. Lobbying isn’t just about walking in and saying what you want – that happens all day, every day. It’s too easy to get lost in the crowd. Lobbying is really about building relationships, and a thank you card goes a long way. After all – how many people send thank you cards there days? You gotta stay in the front of people’s minds!

1:01 PM: Off on another visit, on the Senate Side this time!

4:41 PM: Had a meeting with the staff of Senator Lindsey Graham. Excellent meeting! Mr. Colin Allen remembered me from two years ago wand was very receptive to our request! He understands where we are coming from, and why we need more survellence and research. I think we can count Senator Graham as a WIN!

I hung around in a Senate office building cafe rather than return to the hotel and then have to go back, and later had a good meeting with Senator Jim DeMint’s staffer. This young man just started – he doesn’t even have business cards yet. but he warmed to the subject and before long, he had a good understanding of what we were looking for. Of course, we left our Ask Sheet and in a few moments I’ll write the visit reports.

I was happy to have my Cardiologist, Dr. Mike McConnell, with me during the visit to DeMint’s office!

5;57 pm: I’m going to close the liveblogging now, it has been a great day, I think a lot of progress has been made! Tomorrow, ACHA is presenting the Vision 2020 forum – changing the way Adult Congenital Care is done. Read tomorrow for a look at the future of CHD care !

Make it Easy!

Sung to the tune of Take it Easy, by The Eagles:

Well, I’m a standing on a corner in Washington, DC
Such a fine sight to see!
Hundreds of people showing up to lobby
Most of us with a CHD!
Come on Congress, don’t hold up progress;
We’re gonna find out today who is with us.
We can’t lose, but if we don’t win
we’ll keep coming back again and again.
So clear your schedule we’re coming in,
let’s make this easy!

Work Together

We must all hang together or most assuredly we shall hang separately. – Benjamin Franklin

There is a sheet included in the information packet for Lobby Day 2010 that reads:

I pledge to stay focused on Lobby Day 2010 key message points:

A) Increased federal funding for NIH Research in CHD

B Increased federal funding for health surveillance in CHD

This sheet must be signed and submitted before your registration for Lobby Day is complete. Why? To maintain unity of message. There will be a couple of hundred people walking around Capitol Hill, trying to obtain funding for the Congenital Heart Futures Act. And while we each may feel that funding for our area of interest is important, the surveillance system created by the act is the building block. With it, we can come back later and request funding and needs assessment for all of the different Congenital Heart Defect issues that we focus on: Adult Congenital Care, Fetal Echocardiograms, causes, racial disparities, PulseOx, and anything else. Without the Congenital Heart Futures Act, we ain’t got nuttin’. So think of it as the foundation for everything else to build on.

Knowing that, it is imperative that all of our lobbying teams stay on message. In a way, a lobbying group is like a choir. Imagine what would happen if every member just sang whatever they wanted to? The audience would be screaming – and then they’d get up and leave! And could you blame them?

This is why you are asked to give your word, and to signify such by signing your name.

Either we win together as a team, or we will die as individuals. – Any Given Sunday (1999)

Liberty!

Proclaim LIBERTY throughout all the land unto all the Inhabitants thereof – Inscription on the Liberty Bell

I am at the offices of the Adult Congenital Heart Association (ACHA) helping out during our preparations for Lobby Day 2010. We’ll be here all day, and tomorrow take a passenger train to Washington, DC. Lobby Day is Thursday.

The ACHA offices are located on the third floor, and there are no elevators. Even though I walk every day and do an exercise that involves step walking as fast as possible, I almost couldn’t handle it. Last night during a short tour of the city we visited the Philadelphia Museum of Art. If you don’t recall, this museum is the location of the famous steps from the movie Rocky, and also the location of the Rocky Statue featured in the movie Rocky III.

I’m pretty healthy, in average shape, but with my Congenital Heart Defect (CHD) I couldn’t run the Rocky Steps.

It is appropriate that the ACHA offices are in Philadelphia – the city where freedom began. The city where both our Declaration of Independence and the United States Constitution were signed. Because we are planning the best way to obtain funding for the Congenital Heart Futures Act – something that could set future generations free from the scourge of CHDs.

This fight will not be over in a week. We’ve been fighting Heart Defects for years, and we were only able to add surgical corrections to our arsenal sixty six years ago. One operation which relieved one defect at first – that’s it. Everyone else was still out in the cold. But over time our knowledge grew, and we learned how to stay in the fight longer.

And maybe we’re heading for the day when we know enough to get this disease under control – if we can’t stop it completely, at least learn how to keep it at bay. Because the Congenital Heart Futures Act is our Declaration of Independence –  but just like the document signed here in Philadelphia, we have to work hard to make it mean anything.